Better sharing of genetic information in human health

Since the sequence map of the human genome, the cost of sequencing the genome of an individual has fallen rapidly. This has resulted in a tremendous increase in the amount of human genomic data available to the international research community for the advancement of biomedical research.

Yet, there is an absence of international mechanisms to support researchers in ensuring ethical and legal interoperability. In addition, the multiplicity and diversity of laws, standards and policies on sharing and accessing genetic and medical data represent major hurdles to international collaboration.

To address this gap, a new resource to promote the interoperability of international norms and facilitate the sharing of clinical and research data has recently been launched: IPAC (International Policy interoperability and data Access Clearinghouse).

Located in Montréal at the McGill University and Génome Québec Innovation Centre, the IPAC will offer a “one-stop” service for national and international collaborative research projects. It will provide normative tools and frameworks that respect the laws and regulations of each country while facilitating access to research data in human health.

“As a policy interoperability tool provider and a data access broker, the IPAC will harmonize projects to ensure successful ethics, privacy and access review, thereby reducing unnecessary bureaucracy and delays,” said Professor Bartha Maria Knoppers, co-founder of P3G, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy.

IPAC is a great example of how concerted, forward-looking action can help to meet current and future challenges of genomic research in human health and enhance the capacity for action and influence of research on the international scene.